He's Calling the Shots

Ethan noticed an old slip of paper stuck to the refrigerator. It was a reminder for an appointment with Dr. Milanese, the developmental pediatrician, that we'd made but had cancelled last-minute.

"Why didn't I go to this appointment?" he asked impatiently. I was surprised. Attending doctor's appointments was rarely at the top of Ethan's (or most kids') priority lists.

"Well, I don't know..." I hedged. I couldn't quite explain why I'd cancelled the appointment, and I think it's because I'd be hard pressed to explain why we'd made the appointment in the first place.

When your kids are little, before, during and shortly after diagnosis, these meetings with the developmental pediatrician are essential. They really are the autism experts. Birth to 3 evaluators weren't too phased by his red flags, and neither was his pediatrician, but Dr. Milanese had him diagnosed in an hour.

Follow-up after a diagnosis, especially one that occurs when a child is very young, is critical. Children grow and change quickly, and sometimes (but not as often as people wish) a diagnosis is "fluid." Ethan was diagnosed at 22 months by the CARS (Child Autism Rating Scale) assessment, which is designed for kids age 2 and up. CARS scores range from 15 to 60, with scores between 38-60 indicating severe autism and scores between 30-37 reflecting mild to moderate autism. Scoring under 30 places a child off the autism spectrum (but undoubtedly with some autistic traits). Ethan first scored at the high end of moderate, close to severe. A year later (and the year after that) he scored in the mild category. Was that the result of therapy, or was the test initially not accurate due to how young he was? I'm convinced it was some of both.

But that was at the beginning. Once your child has scored on the autism spectrum three years in a row, it's a good bet he's probably staying there. So visiting with the developmental pediatrician becomes less about assessments and more about "checking in." We've done that once every year or two since Ethan was about 4. I enjoy talking to a professional and chatting about Ethan's progress. That being said, if she was to offer recommendations about therapies or other ideas to implement at school, for example, she doesn't have much clout, unfortunately. I can present the school with a report from the developmental pediatrician, and they can say, "thanks, but no thanks." There's nothing legal there. So our visits really become not much more than informal times to chat. And that bugs me a little, because all I can think is how many other parents may be stuck sitting on waiting lists, desperate to get in and have their child evaluated. Even Dr. Milanese, who has a fast-track kind of program to get toddlers in quickly, has typically a six-month waiting list. Why should we be taking up valuable time?

All of this is a very long way of explaining why I'd decided to just go ahead and cancel Ethan's appointment last year. But now he wasn't having it.

"I want to see her," he said firmly.

"Ummm...okay."

"What are we going to do there?" he asked. "Are there going to be shots?"

"No, Eeth. I told you this before. She's a special autism doctor. She's not going to check your heart and lungs or anything like that. She just talks to you."

"Well, you need to make that appointment." There was a pause. "I'm going to talk to her." Even though the last time we went, Chloe was maybe a year old, he seemed to have no recollection of her. I believe she gave him a game of Checkers.

I'm not sure if Ethan is insisting on this appointment because he can't stand breaking rules, and we had an appointment that we missed, so this is a wrong that must be righted...or if he really is curious. I would love to see him have a really good chat with Dr. Milanese, a doctor that's not going to use code words and pretend he doesn't know what autism is.

We did tell him he wasn't going to be able to trick Dr. Milanese. Even if he used all of his good eye contact and worked hard to chat with her, she would know about his autism. I don't think he's trying to convince her he's something he's not, though, because right now, he's good with autism.

I feel as if I've talked about this woman on and off on this blog for a number of years, sometimes grudgingly, and I have to set the record straight -- she's a really, really good autism doctor. And a kind person who has gone out of her way on numbers of occasions to talk/answer questions via email. Any frustration has been just displaced anger...maybe because there is always a little part of you that thinks, "Maybe THIS time she'll proclaim him off the spectrum," yet she will always point out something new-spectrummy that he does, however minor.

Over time I have learned that line between on and off the spectrum, those numbers just above and just under the CARS 30, represent an amazingly murky area. You can have a diagnosis and be less "quirky" than someone with one. There are many, many of us who reside somewhere in that gray area of almost-but-not-quite. It's okay to live there. Even if Dr. Milanese's job will always be to help people inch as close as possible to that "typical" line.

I don't quite know why we're going, or what we're going to do there, but Ethan wants to meet with the developmental pediatrician, so we're going to -- in November. I consider this perhaps his very first step in self-advocacy.